Wednesday, December 16, 2009

Seventeen year old Nicole Bottles of Victoria is fighting to stay alive. She has Lyme disease, a devastating and infectious disease that has her wheel-chair bound, in constant pain and suffering from constant short-term memory loses.

Tragically failed by the BC healthcare system, Nicole's parent have sold their home and used the proceeds to purchase life-saving medical treatment in the USA.

The situation for Nicole is critical and I'm asking for your help in two ways.

Firstly, I ask for your support as I pursue this issue with the BC Minister of Health, Kevin Falcon. Nicole is far from the only victim in this ongoing mismanagement of critical health care for Lyme disease. Minister Falcon needs to ensure Nicole and others like her are receiving good medical care. That is not happening and it needs to happen now!

Second, I ask you to consider making a small financial donation to Nicole Bottles. This is the season of giving and today I sent her $500. I know they will be grateful for any amount at all. Nicole's situation is so acute that there is no doubt the money will be spent just to offset her immediate expenses. A cheque, payable to Nicole Bottles, can be mailed to: Nicole Bottles, 622 Agnes St., Victoria, B.C. V9Z 2E6. Thank you!

You can learn more about what Nicole and others are going through by watching this excellent two-part CTV documentary. (Please note, it loads slowly and it is about 25 minutes long. Click here to watch the video.)

Nicole was a dynamic and wonderful girl and I know she can be so again. She continues to live with passion and you can read her up-to-date and intimate blog at www.bitemeback.blogspot.com.

David Cubberley

press release follows

PRESS RELEASE

For Immediate Release

December 16, 2009

Lyme Disease Victims Forced Back to USA To Buy Healthcare

Forcing Nicole Bottles and other B.C. Lyme disease victims to pay for treatment in the U.S. is a grievous harm that contravenes the Canada Health Act, said David Cubberley, past MLA and a Director of the Canadian Lyme Disease Foundation.

“Nicole and her mom, Chris Powell, are back in California paying $3900 U.S. to have Nicole's IV antibiotic port replaced,” said Cubberley. “Last week they were refused replacement at an ER ward on the grounds that Nicole hasn’t tested positive on Canadian soil for Lyme.”

“This is costing the Bottles thousands of dollars – money they don’t have – to buy care they’re entitled to under Medicare,” said Cubberley “ Nicole has chronic Lyme that tested positive at a registered U.S. lab, but she’s being denied antibiotics and home services here despite being wheel-chair bound.”

Nicole is like many hundreds of British Columbians whose Lyme disease is never diagnosed in B.C. because of faulty guidelines and flawed testing. Lyme-literate physicians from Seattle to Los Angeles provide the bulk of care to B.C. lyme victims.

“I’m concerned that Nicole is being denied the treatment she needs here in B.C.,” said Lana Popham, MLA for Saanich South. “The family is living in extreme hardship, paying $1100 U.S. a month for Nicole’s meds alone.”

Popham and Cubberley are making a plea for donations to help cover Nicole's recent medical expenses which will total well over $7000. "This situation has all but bankrupted the Bottles family," Cubberley said.

"We have begun a fundraising drive this week to help them with this financial emergency,” Lana Popham said. “David Cubberley started the drive by donating $500. So far, over $1000 has been donated directly to Nicole Bottles and we hope to have at least $7000 by the end of the month".

17-year-old Nicole showed symptoms of Lyme two years ago but saw 12 specialists in B.C. without a diagnosis. The B.C. Healthguide suggests B.C. doctors will clinically diagnose Lyme from symptoms and promptly treat it without tests. In reality, many doctors don’t recognize Lyme and depend entirely on a flawed diagnostic and testing protocol that misses most Lyme infections.

Saturday, August 8, 2009

Hey, it's been a great summer, hasn't it! Time for trips to the lake, hiking in the woods, camping by the waterfall. Loads of deer out there, so I hope you checked for ticks before settling in for the night. Get bitten and you may get Lyme disease, which here in B.C. often means a lifetime of crippling illness.

Lyme disease is a serious infectious illness stalking our province, but you'd never know it because our public health officials are ignoring it. Worse, they've taken to saying it's rare, when in fact it's not. Or, that if you're one of the very few who ever gets it (three to five a year) it's promptly diagnosed and effectively treated, which it almost never is!

I don't have Lyme disease, but I keep meeting people who do, some who got it right here in Victoria. They've all suffered the same fate in B.C.: no clinical diagnosis, so no treatment. Many had their suspicions summarily dismissed by physicians, who are told there's no Lyme in B.C. Others have been given inaccurate tests and told they don't have it. This condemns sick people to live with a debilitating illness that anyone could get just by bringing in firewood!

Many infected with Lyme eventually seek treatment outside Canada because our public health system refuses them medically necessary (and readily available) care in the form of antibiotics. When it does give them antibiotics (rarely), it typically isn't for long enough. Untreated, most go on to develop chronic Lyme disease, which our medical establishment denies even exists, condemning them to live with its ravages without relief.

Lyme disease is a terrifying infection that rapidly colonizes the body after a bite by an insect the size of a sesame seed. A dog collects any number of these professional hitchhikers on a walk up Mount Douglas' trails - be very careful when combing them out, because they may be carrying Lyme disease. Or any number of other ugly coinfections, like Babbesia, because ticks today are sewers.

I'm still aghast our health authorities won't admit Lyme is spreading, deny (without evidence) that it has a chronic form, and don't encourage awareness that if you're bitten, develop flu-like symptoms, aches, and mental fog, you need antibiotics pronto! That would be responsible public health policy that nips infection in the bud, and we're nowhere near that.

Promptly diagnosed, Lyme is often easily cured with a month or more of off-the-shelf antibiotics. Let it set up shop inside and you're on a downward spiral that saps health and vitality. In its worst, neurological forms, Lyme disease is utterly incapacitating - you can't work, care for kids, think straight, or even get off the couch. Ever seen a formerly athletic teenager reduced to walking with crutches and a brace, unable to run any more? I have, right here in B.C.

But our public health officials are dug in. They routinely warn of West Nile virus and cryptoccocus gattii, despite the fact your risk is low compared to getting Lyme. They'll talk swine flu until the cows come home. Comes to Lyme disease, you'll never hear any such urgency. Just how rare and unlikely it is, despite your symptoms. Which are probably just 'in your head'. So maybe you should see a shrink!

But perhaps you've read in the B.C. Healthguide how if you've been bitten and have the symptoms, your doctor will diagnose and treat you for Lyme disease without relying on tests. Pure hokum, it's not going to happen! Typically your doc will either deny we have Lyme in B.C. (sometimes quite aggressively) or insist on a test to prove it, which it rarely does because the test is flawed.

Fact is, our doctors are ill-equipped, too biased, or just plain afraid to diagnose and treat Lyme disease promptly. Afraid of what, you ask? Now that's a good question for the Minister of Health to ask the College of Physicians and Surgeons.

The fact you or I don't have Lyme yet is really just plain luck. Like many, I'm a hiker and I love being out-of-doors, so I'm exposed to ticks. Ever rest on a mossy rock or a log beside a stream? Ever hike the West Coast Trail, swim at Matheson Lake, or rake leaves in your back yard? Then you've been exposed to the risk. Because ticks are everywhere and Lyme is spreading.

Not aware of being bitten? Doesn't matter. Ticks suck blood and are designed to do it secretively, so they can finish their meal in peace. Nymphal stage ticks carry the disease too and may be too small to be seen. An engorged ixodes pacificus tick looks like a small skin tag. People often don't notice it until it's too late.

Never had a bullseye rash? Doesn't mean a thing - many don't develop one after a bite. Oh, but here in B.C. if you don't have a bullseye rash, doctors are instructed by their College not to diagnose Lyme. Despite the fact that perhaps half of those with Lyme don't ever get a rash!

Think there's a reliable scientific test that 'proves' you have Lyme? Think again! The two-stage U.S. test used across Canada is fatally flawed and medically unjustifiable. The stage one ELISA test misses the majority of infection - Mickey Mouse was in charge of the 'science' behind its design. Seems it was contrived in an extremely narrow manner, perhaps so for-profit U.S. insurers could limit their liability for the fastest rising infectious disease in North America today?

So between doctor fear and lack of knowledge, a rash that's not always present, and a test that doesn't work, most new Lyme disease is missed. Which means almost all Lyme in B.C. and across Canada is the chronic form, which is really ugly.

Why the complacency around such a serious infectious illness? Why's our early warning system so disabled? Why the reluctance to diagnose Lyme from symptoms and treat pre-emptively with readily available, inexpensive antibiotics? Antibiotics that are routinely prescribed for strep throat to severe acne! Antibiotics that are pumped into feedlot cattle and battery chickens every day. Again, good questions for the Health Minister and his representatives on the B.C. College of Physicians and Surgeons board.

The short answer I've come to after a lot of probing is this: we've developed what's called a 'systemic' bias against diagnosing and effectively treating Lyme disease. 'Systemic' means it's not a decision of any one person, but rather those with oversight of public health and medicine have fallen into a pattern of beliefs that create a bias against effective treatment. They've papered the bias over with some pseudo-science (Mickey has been busy!), and erected a barrier against prompt diagnosis and treatment. And it's like a fortified wall!

How did it happen? Well, it seems we've imported some cooked science from south of the border. Our American colleagues have created some daft guidelines that pretty much ensure Lyme is rarely diagnosed and promptly treated. And we've bought into those guidelines without doing any due diligence or having public discussion of any kind. While these guidelines aren't written as formal policy here in Canada, our professional medical societies enforce them quietly behind the scenes without acknowledging their role.

Sneaky hey? We even have professional vigilantes who enforce the 'rules' despite their not being written down. Infectious disease specialists have taken over the right of our GPs to prescribe longer courses of antibiotic therapy - just what's needed if you have chronic Lyme, which nearly everyone with Lyme develops in B.C. And they help the B.C. College, the Centre for Disease Control, and our public health officers enforce the fiction - again not written down - that all you need if diagnosed (remember, few ever are) is two weeks of antibiotics. Where did two weeks come from? Show us the science and the due diligence on that 'rule'. How did infectious disease specialists get control of doctor prescribing?

What it all means to a parent with an infected child is that chronic Lyme will be allowed to develop, then long-term antibiotic therapy will be denied. Period! And in a public health care system, where all medically necessary treatments are paid for without patient involvement, you cannot purchase your own therapy. Antibiotics are a controlled substance. That means you either watch helplessly while your child is wracked with pain and unable to function, or you head south. To that for-profit medical mecca that created the guidelines that stop you from getting treatment in Canada. And then you privately pay for testing, diagnosis, treatment and lodgings, if you have the money.

A lot of British Columbians are doing just that. How many isn't known (public health officials aren't interested in this phenomenon) but many dozens have headed to Washington or California where Lyme-literate doctors are willing to treat suffering patients. This isn't an easy step to take, because treatment is very expensive, especially if it involves intravenous antibiotics. Not a few lose their house and savings in order to buy relief or cure.

What's truly bizarre is the guidelines being forced on docs here in B.C. have been struck down in the USA by Massachusetts Attorney General Richard Blumenthal. Seems he noticed Mickey Mouse was in charge of the science behind the guidelines and didn't think it was appropriate. His investigations turned up flawed process, conflicts of interest, and failure to consider scientific work in an unbiased manner. But you'd never know that here in colonial B.C., where no mention is made of guidelines.

Indeed, the B.C. College hasn't even bothered to inform doctors that the Infectious Diseases Society of America has been forced by Blumenthal's investigation to redo the guidelines from scratch. Neither the College, nor the CDC, nor the provincial health officer has acknowledged this dispute or seized the opportunity to mandate made-in-Canada guidelines for Lyme diagnosis and treatment. CYA appears to be in over-drive, and the cone of silence has descended.

Sounds paranoid, but I assure you it's not. We've adopted guidelines that protect private insurers from paying for treatment of the CDC-estimated 200,000 new cases a year in the USA. Sadly for medicine, U.S. professional societies have used flawed processes to write 'cooked' guidelines based on 'junk' science, but that cleverly use the language of science, were published in reputable journals, and have been accepted (without any diligence) as 'evidence-based' and reliable.

And with our awe of things scientific and American, our College of Physicians and Surgeons and our CDC have absorbed this hooey and quietly politicized treatment in B.C. Behind the scenes, that is. Nothing on paper. No chief spokesperson. Just no diagnosis and treatment for sick people. And lost confidence in public medicine.

This willful blindness by officials is a travesty in a public healthcare system, where 'who pays' is not an issue and every member has a right to medically necessary care for a bona fide illness. Readily available care for Lyme infection is routinely withheld in every province in Canada today! If you're lucky enough to find a doctor who'll diagnose Lyme from symptoms, that person will have to have the courage to treat you with antibiotics until s/he's convinced you're clear. And risk the wrath of the College if s/he's found out.

What it all means is that if you get bitten by an infected tick in B.C., your regular doctor is highly unlikely to recognize the symptoms and be brave enough to promptly treat you. So your health is going to deteriorate rapidly, and you'll be subjected to serial misdiagnoses of your illness. You need antibiotics, but you'll have real trouble getting them, especially for long enough to get rid of the infection for good. The gatekeepers ration antibiotics very strictly here in B.C. - unless you're cattle in a feedlot or a dog with Lyme disease!

If your doctor is a caring person - as most are - s/he will embark on a series of diagnoses of other illnesses like fibromyalgia, Parkinson's, or ALS. This can go on for a long time and reveal a lot about conditions you don't have. Six months or a year on this merry-go-round and you've got chronic lyme disease, which won't be diagnosed and treated in B.C. Because those guidelines deny there's any such thing (Mickey's tour de force). Now you're really alone with your illness, abandoned by public healthcare.

It's curious how we've chosen America's flawed guidelines in preference to developing our own. In fact, no due diligence of any kind has been done on any of the science by any of the responsible agencies! None!So effectively we've bought a pig in a poke! And without ever considering the evidence from Europe, where they've been dealing with borrelia for far longer than we have.

Pity those families with children struck down in their prime by Lyme disease but unable to get diagnosed and treated in B.C. Think of Nicole Bottles, Alyson Ingenthron, Matt Pierce or Marie McQhuae. Their families get to drain their savings, maybe sell their homes, go to another country and pay for drugs that are readily available here at home.

Nightmare you say! Happening right here in Canada, home of public healthcare. And with such a deep chill induced by the public health posse that docs are afraid to speak out for fear of reprisals. So most just go along with the orthodox approach, which teaches them to say 'we don't have Lyme in B.C.', or 'Lyme is rare in B.C.'. It all adds up to the denial of medically necessary care for sick people with a curable infection. And that's intolerable.

Want to grow your awareness of Lyme disease symptoms and treatments? Go the Canadian Lyme Disease Foundation website, which puts you in touch with the large, and rapidly growing, Lyme-sufferers community across B.C. and Canada. But don't go to the B.C. CDC or the College of Physicians and Surgeons for insight - they're wearing professional blinders and telling the Big Lie: 'Lyme is rare in B.C.', or 'hard to get, easy to cure'.

Want a really scary comparison? Go to the Rhode Island Health website and compare the information there with the scant offerings on B.C Healthlinks. It would be funny if it weren't so real a threat. Oh and by the way, Rhode Island is one of five states with legislation preventing private insurers from denying coverage to people with chronic Lyme disease. Too bad we don't have little Rhode Island here in B.C. to protect us when medically necessary care is denied to sick people!

Want to do something about it? Join me in demanding made-in-Canada diagnosis and treatment guidelines, based on all the available science, including the experience of Lyme-literate treating physicians. Demand these guidelines be developed transparently, that experience from Europe be weighed in the balance, and that patient-centred care be the focus. Demand that the provincial Minister of Health activate his representatives on B.C. College board to 'protect' the public interest.

This blog is about the rise of Lyme disease and other tick borne infections, in British Columbia and across Canada, and the failure of public health agencies to adequately warn and protect the public from this debilitating disease. Its purpose is to alert people to a danger that increasingly surrounds them, in the outdoors and in their backyards, and to pressure government, opinion leaders and public health officials to reform the medical framework for Lyme disease diagnosis and treatment. Today, due to faulty tests, lack of physician knowledge and inadequate treatment protocols, many patients are being forced to live with a devastating chronic illness rather than being given medically necessary care. Most have to travel to the United States to purchase healthcare they are entitled to under law in Canada, but currently denied. Many people are living in poverty as a result of personally financing antibiotics, which are the sole control and cure for chronic Lyme disease. This blog discusses issues and offers resources relating to Lyme disease diagnosis and cure. It aspires to be an instrument of change.

David Cubberley

I'm a community activist and have worked as both a Saanich Councillor and a Member of the Legislative Assembly for Saanich South (where I served as provincial Health Critic and first learned about Lyme). I advocate much-improved diagnostic and treatment protocols for Lyme and its co-infections, and for clear recognition of Lyme as a chronic, treatable disease. I also lobby for doctors to be informed not to rely on current Lyme testing, which is faulty but often used to rule out Lyme and withhold treatment. I have been serving as BC Director of the Canadian Lyme Disease Foundation (CanLyme)since 2009. Much information and advice about this complex and troubling disease is available at the CanLyme website: http://canlyme.com/. To arrange for public presentations on Lyme disease and public health, please contact me at: spokesman@telus.net.

ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.